Refused surgery!!! Help!

[Cobweb2]

Hello ladies,

I haven't posted on here before but have been reading and following for sometime. It seems to be the only place to find advice, reassurance and positive stories as Google is the complete opposite.

My Mum (73) was taken into A&E in June 2020 with heavy post menopausal bleeding; had ultrasound, biopsy then MRI scan. We were told results over the phone beginning of July. It was endometrial cancer stage 1B. Then heard nothing for about two and a half months!! We phoned, emailed but never any answer or reply, really started to worry - surely you don't wait this long to start treating cancer. We then got our GP involved and suddenly received a letter for hysterectomy surgery pre-assessment appointment (October). Then saw a letter to GP saying diagnosis high grade 3 serous endometrial carcinoma, so googled it - rare aggressive type, poor prognosis. It seems to behave more like ovarian cancer than endometrial which is how I found this forum and hope can help with same treatment options. So if they knew this why did they do nothing for over 2.5 months! Because my Mum had cardiomyopathy, is on medication including blood thinners and has osteoarthritis she was classed high risk for surgery. The preassessment anesthetist and cardiologist said OK to go ahead with extra care and caution.

Then we saw the 'SURGEON'. What a callous, horrible man with a graveyard attitude. He said very high risk for surgery, 1 in 50 chance to survive the op! Very obvious he didn't want to do it. We said we want to go ahead. Had to have another CT scan s it is now November and things might have changed. Surprise, surprise, now stage 4 and has spread to omentum and meso colon. The surgeon now says inoperable, saying there is no point in doing any surgery unless you can get it all.

She started chemo (Carbo on its own) in Decembr and has coped well. Scan after 3 cycles showed 2 main tumours shrunk by two-thirds - 15 and 12 mm. Others are the same but said they hadn't shrunk as well so might be scarring.

The Surgeon still won't operate and has convinced oncologist it is too risky. Just finished cycle 6 and had CT scan with results at first face to face meeting next week. I see surgery the only hope for getting rid of this or long remission. Is there anyone on here who has had surgery with other health issues, eg heart, blood thinners, etc?

Sorry for such a long post!! Thankyou for reading.

[Lovedogs41]

Hi there

Sorry to hear what your Mum is going through,what an ordeal for you all.If it was me I would get a second,third opinion either on the NHS or go private,which might atm be the quicker option,that surgeon sounds awful.

Wishing you all the best x

[SASSY196]

Your mother seems to have been treated very badly in the sense that there has been poor communication and services whch should be in place do not seem to have kicked in. COVID may have contributed to this but it is not acceptable and her co-morbidties should not effect this. There is guidance on pathways via NICE (google this or GP should be able to give you ). Has she an allocated cancer specialist.

I agree re second opiniion - perhaps from a cancer specialist hospital. I am at Marsden who are excellent- surgeons there exemplar at their work and so kind .One of my oc friends has done very well without surgery . In her case the surgeon (from Marsden also) was reluctant to operate because of various risks, but he spent a long time runnning scans/ tests etc and then discussing his view with her, with CSN nurse present - she was able to decide (alongide surgeon) in an informed way that surgery was not in her best interests at this time - incientally she has had stable cancer and is (fingers crossed) doing well on chemo and parp inhibititaors.. I think being part of an informed decision really helped her - togeher they balanced the risks and came to this decision whereas your mother is just being 'told' the decision. Also as cardiologist / anaethiist are willing to take decsion it is interesting surgeon isnt .So my advice get a second opinion, challenge the surgeon's view so your Mother takes an informed decision . I'm wishing you /her all the best.

[Realistic in reply to SASSY196]

Please get a second or even third opinion, unfortunately this last year or mores not been good really for any of us. I've waited 3 months for an urgent bowel referral. Got it Friday and would you believe it a telephone consultation On Monday. I had a bit of a hard time getting my treatment to start with. Because l have a Brain tumour as well as serious grade 3 OC and in the past have had 3 Brain operations leaving me what they class as very vulnerable. So l paid private under the advise of my GP best money spent ever. But it did get things moving and although there's no cure for my cancer lm doing

Ok and will fight on until whenever . It was only

The consultation l had to pay for. And so far after more operations than l care to name

6 doses of 9hr sessions of Carbo/Taxol l seem

To be stable. Unfortunately you do have a struggle seeing the right person , but there will be someone out there that can help you. I thank god your Mums got you in her struggle, l have

My best friend my husband who incidentally was more or less written off nearly 30 years ago with Pancreatic cancer and is helping me

me with my battle. But actually lm really as fit as a fiddle at the moment. You can get some really good advice on here. Sending love & hugs to you all, lm not as good at remembering names and things as many of you are, but your all important to me .SheilaFxxx

[Cobweb2 in reply to Realistic]

Thankyou for your reply! You have had a dreadful time but i'm glad you are feeling well and have your husband! Take carexx

[Cobweb2 in reply to SASSY196]

Thankyou for replying, I refuse to take just his opinion! I Wish i had told him the joke i heard on Doc Martin the other week- what is the difference between God and a Surgeon? answer- God doesn't think he's a Surgeon!!!xx

[SASSY196 in reply to Cobweb2]

Think that sounds like the perfect response. My surgeon was Mr Des Barton at Royal Marsden, he was also surgeon for my friend who choose not to have surgery. He is not only brilliant with exacting standards but he was humble, kind and compassionate. If you are near London may be worth considering him or colleague as well as Prof Christina who lots rave about.

[Cobweb2 in reply to SASSY196]

Just looked your surgeon up, he sounds wonderful! When you ask for a second opinion can you say exactly who from? We are in mid kent.x

[SASSY196 in reply to Cobweb2]

Hi, I don't know that he will recall me but I would be more than happy for you to use my name. I can't see pm mechanism but if you pm me I will give you my details or you can say came from the forum. I saw a few other Marsden surgeon's when they were doing rounds and Mr innes was also very caring, he heads department. Also lots on this site highly praise prof Christiana so may be worth checking her out. If you go online at Marsden/ other hospital think it is quite easy to get second opinion for your GP. Good luck xxx

[Jacky5]

I'm really sorry you're both going through this.I agree with the other ladies and think you should ask for a second opinion. If a second surgeon thinks surgery would be possible and beneficial that's great but if he/she thinks it won't help Mum you at least know it's in Mum's best interest.Wishing you both all the best.

Liz. X

[Cobweb2 in reply to Jacky5]

Thankyou!

[Duskygem]

Hi Cobweb sorry to hear about your mums ordeal, you have both been through the ringer. I agree with the ladies - second opinion is needed. Best wishes for your mum and you. I am up against the surgeons at the moment who say that they won’t operate unless they can get all the cancer. I think I understand why but can someone explain it to me ? ThanksDusky gem

[SASSY196 in reply to Duskygem]

My understanding of this is that if they can't remove it all then it won't make a significant difference to prognosis because it is a given that it will continue to grow however I struggled with this when I was told it as I felt if they removed the cancer they could it would lead to slower growth and so longer prognosis but I was lucky enough to become operable and so never got to bottom of this. Really wishing you the best x

[Duskygem in reply to SASSY196]

Thanks Sassy I’m due a pet scan next week - if the cancer has spread above diaphragm I won’t get surgery. Fingers crossed it hasn’t. Thank you for your reply x

[rosebine in reply to SASSY196]

This was my arguement, if they got a lot of it out surely the chemo would have less work to do and concentrate on the residue?

[SUE7777]

I'm really sorry and disappointed to hear this. I would say if the surgeon doesn't want to operate keep well away from them and find a more competent surgeon, also some surgeons operate after some chemo has taken place as it make the op quicker and less aggressive. You are entitled to a second opinion I don't know where you are based but Professor Christina Fotopoulou at Hammersmith Hospital has a very good reputation. Good luck and make haste Sue xx

[Cobweb2 in reply to SUE7777]

Thankyou for your reply! We don't want to ever see him again!xx

[Realistic in reply to Cobweb2]

Can't say l blame you, your Mum deserves better, hate to say it but he's no idea how you both feel with the situation. Definitely 2nd opinion & good luck. Yes l agree Christie's M/cr is excellent all depends on where you live. If he was in her situation he wouldnt have such a callous attitude . Xxx

[SUE7777 in reply to Cobweb2]

You can complain about him but I think your too busy at the moment. xx

[thomas62]

Sorry to hear any your mum's problems. I would go for a 2nd opinion and definitely at a major Cancer centre eh RoyalMarsden in London or Christie Hospital in Manchester. Good Luck

[Tillymint61]

Have seen in this forum people getting second opinions that have indeed offered an opposing view to the first 'inoperable' descion and they have gone on to have surgery. Search in forum using 'second opinion' x

[rosebine]

I was deemed inoperable for stage 3 serous ovarian, told no benefit, too risky due to co morbities ( cardiomyopathy!) but after 12 cycles of chemo I have had my op.Dont know whether this is the original surgeon or a different one. Try for a second opinion.

[Cobweb2 in reply to rosebine]

Hi Rosebine! I have followed your journey and we are so pleased how things are going for you! I did notice you had cardiomyopathy and am I right in reading you are at Maidstone because so are we!! Do you mind telling me what medication you are on for your heart? I read the name of your Surgeon which is not the horrible one we got! Do you know who your anesthetist was and do you see Dr Nunn in cardioligy for your heart? Thankyou in advance!x

[rosebine in reply to Cobweb2]

Yes Im at Maidstone, but not for heart.I was diagnosed at Medway and been under a consultant there, but only see him once a year ! I am only on propanalol, beta blocker.Its never given me any problems though except for paroxysmal fibrillation and irregular heartbeat. No idea who anaesthetist was, he probably told me before he put me out but cant remember ! Also n a blood thinner

[bamboo89]

Like the others,I would strongly suggest you seek a second opinion elsewhere - you don't say where you are, but I'd recommend Queen Charlotte's hospital/Hammersmith hospital if you can get an appointment. My surgeon was Alan Farthing, but Fotopoulou has a very good rep too...

Miriam

[Cobweb2 in reply to bamboo89]

Thankyou!

[Neona]

Definitely second opinion needed- worth paying for it to get a quick consultation. Prof Christina Fotopolou has been recommended many times for difficult surgery. There is also a trial called Atari that takes endometrial cancer patients . I’m not sure if heart problem is an exclusion but worth checking out .

[Cobweb2 in reply to Neona]

Thankyou will look into that!x

[Cumbrianlass5]

So sorry for your mum. Her story is very similar to mine. Get a second opinion and a third. My GP referred me for the second and my cancer nurse for the third. I am classed inoperable but responded well to chemo, feel very well now and am on PARP inhibitors. If your mum is not BRCA positive, there is a PARP inhibitor called Niraparib which was approved for NHS funding in January this year. I get it via the Northern Cancer Centre at the Freeman, Newcastle. Best wishes to you both x

[Cobweb2 in reply to Cumbrianlass5]

Thankyou for replying! I am sorry you too are going through this! I'm glad you responded well to chemo and lets hope the PARP inhibitor works wonders! I'm worried that she wont be offered PARP inhibitors because I don't think they are licensed for endometrial cancer! There is very little available!

[Cumbrianlass5 in reply to Cobweb2]

Well I do hope chemo works superbly and that there might be a trial she could be included on. All best wishes x

[Starbarn]

Hi. I’m sorry you’ve had this experience. I had a very similar experience with a trainee. I found her patronising. I was told no more chemo and watch and wait as I had chemo 6 months prior and my cancer was back . When I challenge her about the information about my scan she eventually said “ we haven’t had our big meeting” which meant she read the report but it had not been discussed with my team. . I told her I was not prepared to do nothing and wanted a second opinion with a view to a trial. She did arrange this after her “big meeting” I am now on the ATARI trial but from start to finish took a few months. I am 53 and still in good health. I would definitely go for a second opinion. Even if it confirms what she has said . I would also ask to speak to your mums oncologist who hopefully has better communication skills. Good luck